Dedicated to ‘Mental Health Awareness’ Month and all those things of which we truly need to be ‘aware’…
Recently I wrote an article about Autism Speaks (‘Smash the Blue Lights: Autism Speaks is a Danger to Self and Others‘) that referenced the National Alliance on Mental Illness (NAMI). In doing so, I presumed a fair amount of knowledge on the part of most readers regarding the many problems with said organization. However, what I very quickly came to realize is that the knowledge that I’ve come to know so well isn’t as shared as I’d thought. In fact, more than one commenter reflected on what is (and isn’t) understood about everyone’s favorite ‘mental illness’ advocacy organization.
One person said, “I was not aware of the ‘dangers of NAMI’. I’ll have to read about that … The idea that NAMI is harmful is a new one to me.” I appreciated this person’s openness to learning, but then another commenter pointed out that it’s pretty tough to even find critical information about this particular giant. As that commenter noted, doing a Google search on Autism Speaks automatically pops up the alternate search phrase of ‘autism speaks criticism’. On the other hand, the only alternate results that pop up on the first page of a NAMI search (that aren’t something generally positive about NAMI) are focused on some animated character with the unfortunate name of ‘Nami’ from a game called ‘League of Legends’. (As it turns out, this Nami character reportedly loves money even more than she seems to enjoy low-rise pants. Coincidence?)
It seems one mostly needs to already know what they’re looking for in order to find what I think of as some of the most established criticisms of this particular organization. And even with knowledge and intent, it can require some fairly persistent and advanced Googling efforts to unearth all there is to be found.
That is a problem, and all that follows is my best effort toward being a part of the solution.
NAMI & Pharma Sitting in a Tree
In case you haven’t heard, NAMI takes pharmaceutical money. A lot of it. And there’s a ton on the Internet about it (if you know where to look).
In 2009, the New York Times published an article called ‘Drug Makers Are Advocacy Group’s Biggest Donors’. Earlier that same year, Senator Charles E. Grassley sent inquiries out to a number of so-called ‘disease and advocacy’ organizations — NAMI just one among them — requesting the disclosure of any ties to drug and device makers. Previously (and subsequently), NAMI had done its best to keep such fundraising details relatively private, but they did respond to this ask.
In fact, Grassley’s inquiry (and the resultant New York Times exposé) led us to learn that NAMI received about three quarters of their donated dollars from the pharmaceutical industry. Three quarters. (That’s about 23 million between 2006 and 2008.) Now, it’s worth noting that this wasn’t the first time this sort of information had been released. In fact, ten years prior, Mother Jones had obtained similar details and included them in an article titled ‘An influential mental health nonprofit finds its ‘grassroots’ watered by pharmaceutical millions.’ But apparently Mother Jones wasn’t mainstream enough — nor the 11.72 million from 18 drugs firms between 1996 and mid-1999 quite shocking enough — to elicit the sort of move to action that the Times piece did.
Since 2009, NAMI has claimed transparency by sharing the name of donors who contribute more than $5000 on their website, perhaps hoping the public would be thankful for at least that much and just move on. (Never mind that the manner in which they do this is largely inscrutable.) Peter Earley (among others) was also quick to jump to NAMI’s defense, publishing an article titled ‘NAMI and Drug Makers’ $$$’ in 2010. He claimed that the organization was surely not in any pharmaceutical pocket, and wrote about NAMI’s new ‘strict policy’ related to receiving drug company money. He even included a link to the policy, and to a detailed report on what NAMI had received in the last quarter and how it had spent those funds. Unfortunately, all those links are dead at this point, and if such policies and reports still exist, they’re certainly not easy to locate.
What you can still find (and quite readily, I might add) are annual reports. Take the 2015 NAMI annual report for example. It’s been six years since Michael Fitzpatrick, NAMI’s Executive Director at the time, was quoted in the above-named New York Times article as saying, “Everyone I talk to wants to have more balanced fund-raising,” and all we have to judge their progress by are six pages of mostly tiny-font scrawls detailing their ‘major donors’. While they claim openness and honesty, we’re left with data that requires quite a bit of insider knowledge and/or patience to fully analyze.
Sure, when browsing their corporate sponsors list, most will recognize names like ‘Eli Lilly’ or ‘Pfizer’ as large scale pharmaceutical companies. But what about Teva (known better to most as a popular shoe brand), Lundbeck, Corcept Therapeutics and Actelion? Yes, those are pharmaceuticals, too. All told, of the 35 ‘Corporate Sponsors’ listed, 22 are pharmaceutical companies. Among the remaining contributors on the list are seven behavioral health and hospital management companies, one group specializing in genetic testing to match up individuals with the ‘best’ drug match (shiver), two schools (one of them expressly for psychiatrists and pharmacists), a billing company (dedicated to psychiatrists, psychologists and the like), and one beauty products corporation. Between the pharmaceutical lot, they are responsible for Klonopin, Adderal, Prozac, Zyprexa, Abilify, Effexor, and Thorazine (to name just a few). One of them (Allegran) is responsible for recent efforts to market Botox (yes, that Botox) for depression.
And all we know is that they donated some amount more than $5000. That could mean $5001, or it could (to take just one example) mean the equivalent of the 1.1 million that Eli Lilly gave to NAMI in 1999 alone.
Then we get to the individual donor names. How is one to analyze that? Who, for example, is to know (without some intentional digging) that the second donor listed — Robert Abel — appears to have direct ties to Pfizer? I suspect if one had the time to do the research, they’d find much the same among at least a handful of other donors and their spouses. Meanwhile, scroll down to the ‘Workplace and Matching Gifts’ section, and even more pharmaceutical names surface.
The Romance Continues
But if you thought that was all there was to uncover in this particular love story, you’d be missing some of the very best parts. It would be like watching the Princess Bride, but stopping before Wesley reunites with Princess Buttercup after yelling that identity-revealing “as you wish” whilst he rolls down a hill. Or missing out on the “I’m flying!” scene during which Leonardo Dicaprio embraces Kate Winslet as she stands at the helm of the Titanic. (This, of course, before the ship starts to sink.)
So, in case you didn’t know, there are many other ways for money to exchange hands beyond direct donations. And they don’t require such pesky things as public listings of who’s contributed what to whom. For example, a while back, another former NAMI president, James McNulty, reportedly received thousands from Pfizer and other drug makers for his participation in various events. Consider this excerpt of allegations found in a whistleblower lawsuit (per former Pfizer drug rep, Mark Westlock) as reported by CBS News in 2009:
During the time he was president of NAMI, James McNulty received thousands of dollars for regularly speaking on behalf of Pfizer and other drug makers at various company sponsored events. In an arrangement ethicists say is highly irregular, McNulty would process the “grants” through NAMI Rhode Island. In order to reduce paperwork, according to McNulty, the drug maker would then give NAMI Rhode Island a check and NAMI Rhode Island would in turn give McNulty a check. At no time did McNulty disclose to the audiences at his various speaking engagements, or to NAMI’s membership, that he was being paid to speak by drug makers.
But these are merely allegations, right? Well, in case you’re interested, this turned out to be a part of the largest criminal and civil health care fraud action ever brought by the United States Department of Justice, and resulted in a $2.3 Billion dollar settlement, with $102 million divided between the various informants involved (Westlock just one among them).
But that’s not all. Remember that Mother Jones article I mentioned earlier? Well, there was more than just donation data mentioned in that one, too. In fact, one of the ways of ‘giving’ that the article uncovered was by loan of employee. For example, at least for a period in the 90’s, Jerry Radke, an executive employed by Eli Lilly, was ‘loaned’ to NAMI. In other words, he was on Eli Lilly’s payroll, but actually reported to and worked at NAMI headquarters, engaging primarily in ‘strategic planning’. I can’t help but wonder what that looked like.
Oh, and don’t forget, if you look at NAMI’s annual reports not only are these sorts of ‘arrangements’ left out, but you’re also only seeing donations that go to NAMI National. And, of course, NAMI’s full model includes state chapters and affiliates. Hundreds of them. In 2010, Senator Grassley followed up his 2009 inquiry by also asking state-based NAMIs to report on their donations. Turns out they receive pharmaceutical dollars, too. According to research found on Mindfreedom, Inc., California came in first that year with $632,000 in donations recorded.
A Pharmaceutical Nail For Your Drug-Filled Coffin?
Still have your doubts about whether or not pharmaceutical interests are driving NAMI? Well, don’t lean solely on me to draw your conclusions. If you’re concerned that I (or my various sources) are somehow skewed, then why not go right to the pharmaceutical industry itself?
I love to quote what I’m about to quote, so if you’ve read some of my earlier articles, you’ve perhaps seen it referenced before. (In fact, it first appeared in my blog, ‘Dear NAMI: My Apologies. I’ve Been Unfair‘, where I examined pharmaceutical linkages with Mental Health America and other advocacy organizations, too.) It’s my favorite ever Google find.
The article is ‘Public Relations: Why Advocacy Beats DTC’ by Pharmaceutical Executive Josh Weinstein. It was published in 2004 on Pharmexec.com, an industry website. The article centers on the idea that ‘Direct to Consumer’ advertising sure is a pain because of such pesky things as the requirement to disclose potential negative effects, but that working with advocacy organizations is “one of the most accomplished means of raising disease awareness and enhancing the industry’s image as a deliverer of new and tangible value to patients.”
More from Weinstein:
“I have witnessed that the most direct and efficient tool for driving long-term support for brands has been, and continues to be, a well-designed, advocacy-based public education program.”
Great. And in case you didn’t make the connection on your own, when pharma execs refer to ‘advocacy organizations’ they are referring to NAMI. (Well, and Mental Health America… And the American Association of Suicidology… And Children and Adults with Attention-Deficit/Hyperactivity Disorder… And… Well, I digress.)
Sheila Rothman, Victoria Raveis, Anne Friedman, and David Rothman also conducted a study of disclosure practices between pharmaceuticals and what they referred to as ‘health advocacy organizations’ (HAO) in Government, Politics, and Law (April 2011, Volume 101, Number 4). Of note in their review, they reported:
Lilly’s grants went primarily to HAOs working in its areas of therapeutic interest and in areas related to its best-selling products. Lilly has acknowledged this type of correlation between its business interests and its grant giving. Its ‘‘Principles for Interacting with Health Care Professional Associations’’ state that grantees should be committed to ‘‘market oriented solutions to important health care issues’’ and that Lilly expects to ‘‘build long term relationships…based on mutual support.’’
This same article cited disappointing realities about the circulating claims of transparency for NAMI and pharmaceutical companies alike:
Only 25% of the HAOs that received Lilly grants acknowledged Lilly’s contributions on their Web sites. Only 10% acknowledged Lilly as the sponsor of a grant event. None disclosed the amount of a Lilly grant. Thus, in most cases, neither policymakers nor the public can readily learn about the financial relationship between an HAO and Lilly.
This lack of transparency is disappointing because, either by design or through a convergence of interests, the HAOs in the current study pursued activities that promoted the sale of Lilly products. In the area of neurosciences, Lilly gave NAMI $450000 for its Campaign for the Mind of America. NAMI has advocated that cost should not be a consideration when prescribing for patients. ‘‘For the most severely disabled,’’ insisted NAMI, ‘‘effective treatment often means access to the newest medications such as atypical antipsychotic and anti-depressive agents…. Doctors must be allowed to utilize the latest breakthrough in medical science…without bureaucratic restrictions to the access for life-saving medications.’’ To the degree that NAMI’s campaign succeeded, the market for Lilly’s neuroscience drugs expanded.
STILL not convinced? Think Mad in America and all of its authors are somehow too ‘anti-psychiatry’ (or something) to be trusted? Well, erroneous assumptions aside, perhaps you might be more comfortable considering the words of someone who is decidedly pro-psychiatry in its current form, Mr. DJ Jaffe. Jaffe speaks directly to his own concerns regarding pharmaceutical influence over NAMI in his article, ‘Does the National Alliance on Mental Illness represent seriously mentally ill?’ Therein, he cites several examples of influence. Here are just a couple:
When Sandoz (ADR) marketed Clozaril, the first atypical antipsychotic, they tied buying the medicine to buying blood monitoring services from their subsidiary Caremark. This greatly inflated the price and made it harder to get. Everyone—but NAMI—was outraged. Medicare and states were refusing to pay for it. Hospitals wouldn’t administer it. Attorney Generals were suing. The Wall St. Journal and NY Times reported on the problem. Yet NAMIs position throughout was “we need more information”. Sandoz was a major NAMI funder.
When Eli Lilly the makers of the atypical antipsychotic Olanzapine came out with a ‘scholarship program’ (educational grant scholarships conditional on taking the drug), the NAMI membership was instantly revolted by what was in essence a bribe to take it (why not lower the price, rather than inflate it to pay for the bribe?). In addition, what would happen if you went off the med? Lose the scholarship? Dr. E. Fuller Torrey brought the concerns to the media’s attention in the New York Times, in the same article, NAMI issued supporting communications. Eli Lilly was a NAMI contributer.
Thanks, Jaffe! You gotta know we’ve fallen pretty far when Torrey and Jaffe seem worth recognizing in a debate about the merits of NAMI.
Not All About the Bank
Everything to this point has been about money, but really, it’s about so much more than that. If it were all as simple as ‘the bigger NAMI gets, the more effectively they can promote psychiatric drugs, thus the more the pharmaceuticals give them, thus the bigger they get’, then the point of interruption might be a bit clearer. But, really, in such a case as this, all that cash means something far greater: power and voice. It means they get seen.
NAMI has the money to make commercials, host high profile events, and launch national campaigns. They have the time and energy to lobby for legislation and lure in corporate partners to sign misguided pledges… because, you know, everyone’s doing it, and you’ll look like you don’t care about the issues if you don’t! When the media (or the White House) is looking for an ‘expert’ on ‘mental health’, NAMI springs to mind because… well, brand recognition. Money begets voice, and voice begets money. That’s just the way the story goes.
All the while, we — who are influenced by real life experiences and the desire to improve lives (rather than fatten pockets) — are stuck standing in the shadows. This is NAMI’s legacy. Started by parents huddled around a table in 1979, they’ve made their business on talking about us without us while advocating to put our lives on (a sometimes eternal) pause.
Dear Everyone, We’d be Heard Even Better If You’d Kindly Just Shut Up. Love, NAMI
NAMI calls for our silence in multiple ways. One is through the use of force. Some argue that ‘certain NAMI chapters are better than others’, and that’s undoubtedly true, but here’s some of what NAMI’s current CEO (Mary Giliberti) had to say in an article (‘NAMI CEO Answers Critics; Defends Actions & Outlines Top Priorities and Achievements‘) by Pete Earley published in January of this year:
We share your gratitude about the enactment of HR 2646, the Helping Families in Mental Health Crisis Act. … NAMI worked hard and generated hundreds of thousands of petitions, emails, tweets, calls, and letters to members of Congress to make sure the voices of the mental health community were heard.
We were told personally by Hill staffers that the overwhelming numbers of communications from the grassroots had a significant impact on keeping the bill alive and moving it through the lengthy process. Additionally, our staff spent many hours behind the scenes communicating with our state and local affiliates and members, many of whom were receiving misleading information from opponents of the bill.
For anyone not in the know, HR 2646 is more popularly known ’round these parts as the Murphy Bill. It promotes force, violations of privacy, and the virtual elimination of funding for anything not medically driven. Our movement has spent years fighting vehemently against it. We lost that battle just recently when it was snuck underhandedly into the ’21st Century Cures‘ act and passed practically overnight. And NAMI was a huge part of that, using all their muscle to push us aside, and portraying us as little more than purveyors of ‘misleading information’. Pesky little flies to be ignored or swatted away, no matter how much we stood to lose.
When I read documents such as this — or recall how NAMI (both local chapters and national) have lauded Representative Tim Murphy for his relentless efforts to push such harmful legislation — I’m reminded that nothing has truly changed with them. And why would it?
We have to remember this: NAMI is a lobbying organization. As detailed in an article, ‘Pharmaceutical Industry Agenda Setting in Mental Health Policies’ by R. Gosden and Sharon Beder, NAMI (alongside many of their pharma friends) has appeared on the client list of one of the world’s largest public relations companies (Nelson Communications Worldwide). And frankly, at this point, they’ve fashioned themselves into their own PR experts.
We see this play out in their pharmaceutical ties, and we see this in Giliberti’s words. They are deeply invested in their identity as the “nation’s leading voice on mental health” (as it reads on the ‘about us’ page of their website). And, as any public relations specialist will tell you, lobbying organizations of this nature do best when their message is crisp and clear.
In other words, NAMI has a lot to lose by muddying their message with other voices or broadened perspectives. It’s not just their investment in the medical model, or the normal human resistance to ‘change’ that’s at stake here. It’s the fact that their singularity in purpose is precisely what has gotten them so far. Making space for us in a genuine way doesn’t necessarily mean just having to learn to share the table, but that the table may crumble and fall if they pull up too many more seats.
So, Don’t Talk to Me about the Merits of NAMI
Don’t talk to me about the merits of NAMI until they stop telling me my ‘mental illness’ is just like diabetes, while promoting psychiatric drugs that cause just that (or until they stop blindly calling us ‘anti-science’ while refusing to look at the facts themselves).
Don’t tell me about the NAMI affiliates that are the ‘exception to the rule’ until NAMI National stops prioritizing forced drugging. (Until that point, it’s hard to imagine that the ‘good’ parts are doing much more than bolstering the profile of the harmful whole.)
Don’t point me toward the slight improvements or ‘gives’ they’ve made on their website, until they delete their section on ‘anosognosia’ (a legitimate medical condition related to strokes and the like that has absolutely nothing to do with ‘lack of insight’ for people with psychiatric diagnoses and serves only as another way to devoice the voiceless, and justify more drugging over individual objection).
And certainly don’t suggest I’d do more ‘good’ trying to change them from the inside, until you show me that they actually want to give up their hoarded power, rather than use my name and work to say “Hey, look, we’re not so closed minded” while they continue on their merry way, dragging me along behind them.
Calling All Good Citizens of NAMI
And none of this means that there aren’t good people lurking among the NAMI masses. Often there are not only good but desperate people aching for help. These are, after all, NAMI’s (and the pharmaceutical companies) favorite prey, sucked in by promise of finding answers (and a complete void of other options).
In fact, it’s likely that most people connected to NAMI are decent and well intended. And as with any group where good people can sometimes gather and support one another, help has happened along the way. It’s just that they’ve also been a part of creating (or sustaining) a monster that’s taken on a life of its own, and is doing far more harm than good.
And, if you think I’m foolish, or ‘too extreme’… If you, after reading all this, find yourself unmoved to even begin questioning NAMI’s reason for being, or your involvement (personal or professional) with them… I’d ask you to at least give some thought as to why you’re so invested in holding on to your frame.
The Autism community has done a much better job than we have at forming groups that aim to turn their nemeses on their heads. At this very moment, I don’t feel particularly hopeful about our potential for success at overcoming such lobbying giants (NAMI, MHA, and all the rest), but for today, this is my best step forward.
What step will you take?
Hi Sera,
thanks for the insight. As my wife and I have gotten closer to what I hope is the end of her/our healing journey, I contacted the area NAMI rep last year, thinking maybe I could team up with them and start a support group in my town. I had already begun to reconsider that decision because of other things I’ve read here. It’s just so frustrating the depths of influence and manipulation going on in so many areas because of the greed of big pharma and the willing partnership of family members who clearly don’t have the best interest of the one’s they ‘love’ in mind, sigh…
Sam
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Thanks, samruck. Frustrating, indeed. I’m sorry that the potential of that collaboration is looking less bright to you, but I hope there are alternatives and that being here has been somehow helpful even if not in person.
Sera
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To put one paragraph on NAMI people is a disservice to the citizens in general and to the mental health field. SHE SHOULD Have put nothing is available (period) besides NAMI in most areas outside of a web member group. ITS like saying lets criticize the only thing available.. NOT THAT, she does not have valid- great points about funding , growth, availability and the struggles people in crisis and stress are under.. THIS IS a huge void in our system. IN IOWA we have no psychiatrist outside of the major hospitals! NO resources , information, direction, no government agencies, no support but NAMI. OUR GOVERNOR , system, support is broke and disorganized. THE CURE REYNOLDS stated was Privatization and big business buying what shambles is left of our medicaid. The hit piece does simply not addressed the crisis people are in. NO ONE! NO ONE! was there for me.. GET IT! OUR local or National government agencies , hospital, PHARMA, or any one ((BUT))) NAMI was there that I found… Then after a few months searching I found you and a few web sites … THIS after I was sane enough to search the web tirelessly for information. I went to Family to Family(NAMI) and found many struggling as I. Very good people and hugged and talked our way into some kind of help for our loved ones desperately needing any hope the could find. WITH OUT these selfless volunteers I to would have been in a bed beside my son in an institution. THE consideration , care, and showing great concern for myself and other people are unmatched in my life. WE ALL HAD SIC loved ones and cried many meeting . EVERY ONE THERE was at one time in crisis. NAMI IS THE first step for any information, education , support and reassurance the sun comes up tomorrow. IN IOWA only the rich see a DR. in the mental health field. THERE IS ((NO)) alternative but DRUGS as you made your point. MY SON was in the hospital 6 weeks and did not get any better.. EVERY DR<NURSE ,Social worker for the hospital said he needed drugs… to get better,,, THESE ARE HARD, life changing decisions addressed BY a NOVICE hit piece and petrified parents who struggle at any thing string of hope they can reach for-in CONTEXT! THE little obscure web pages were not there. Government -not there, community not there, NAMI WAS.
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Robertj: My heart goes out to you and your son for not receiving supportive services in your time of need. I totally get where you are coming from. It is very painful to seek help and not be able to find help for a loved one in distress. You say that your son spent six months in a hospital and ‘did not get any better’. Your son probably did not get better because treating someone for a bioiogically based ‘disease’ when in actuality they have a lot of problems in life, social and psychological and spiritual in nature is the elephant in the room that Sera courageously addresses but NAMUI avoids. I took took the Family to Family class and it is horrid!
NAMI absoutely must be held to account for their one-size-fits-all embrace of the medical ‘disease’ model of ‘mental illness at the expense of every other, credible model out there.
My daughter, like yours spent time in a hospital. She spent about ten times the amount of time in a hospital that your son spent in a hospital. Like your son, my daughter did not get better. The treatment by force and institutionalization made her far worse. What parents like us have to realize is that any kind of treatment by force, especially treatment involving powerful drugs which reduce a person’s cognition, make them fat and sleep sixteen hours a day is degrading and dehumanizing for 99.9% of the individuals involved. NAMI advocated for treatment by force when it was presented to Congress in the form of the Murphy Bill. NAMI applauded when the Murphy Bill was rolled into the Cures Bill and signed into law by President Obama, despite hundreds of psychiatric survivors and organizations opposing it. This bill dangerously expands the use of force and coercion against our children.
Sera Davidow and many other ex patients work tirelessly to pressure lawmakers and policy makers to create supportive services for our children. When they are critical of NAMI,, they do so for very good reason. NAMI does not advocates for more force/non drug alternatives that are proven effective and humane.
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Hi RobertJ,
there is an alternative to NAMI, but I had to figure it out on my own (and then later I came to this website and they have pointed to a couple other alternatives, but with very limited availability). I’m so sorry for your struggles: I do understand them very much so. When my wife first started going thru things, I was completely overwhelmed: physically and emotionally. I was just lucky that my background was such that I didn’t look ‘outside’ very hard and we had a decent alternative counselor (theophostics) to help us until I got my head screwed on right and figured out how to help my wife. I try NOT to push my blog much over here, and I’ve kind of let it die anyway: just wasn’t enough interest in it from others. But I tried to outline some of the basics of how I used attachment theory and neural plasticity to help my wife overcome her deep, childhood trauma. You can look me up on wordpress if you have interest. No matter what, I wish you well and I’m sorry for your distress.
Sam
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It is my view that merely protesting the APA is not enough, we need to be demonstrating against NAMI (and other hate groups) as well. It is no longer proper PC, and chiefly because of the lobbying efforts of NAMI, to pin the “illnesses” of children (some of them “adult”) on the “sins” and abuses of parents, but there have to be plenty of children haters within the ranks of the NAMI hate group. NAMI promotes forced treatment (human rights violations) and takes money from drug companies. NAMI encourages a obsequious compliance in victims of psychiatry, the mental health system, and NAMI. You want to right this situation? Well, we are well on the way to doing so when we capsize NAMI. Need I say more?
Thanks for this post and report, Sera. As with many, but not all, of your posts, this one is right on target, and the kind of thing we could use more of. Keep ’em coming!
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Hey, Frank. Thank you for your (measured) support. 😉 I agree, and honestly wonder if groups like NAMI might actually deserve even more focus than the APA…
Sera
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NAMI. National Abusive Mothers Incorporated.
“Mental Illness.” Yes, it is your fault NAMI mommy! 😛
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Thanks for this very informative article Sera. We do not have NAMI in Canada, but my husband and I attended a support group at our local hospital that seemed to have a very similar mission. The person running the group was very adamant that everyone should always be taking their medication as prescribed by their doctors. There was a woman who attended who was always talking about alternatives such as diet, exercise, supplements, yoga, etc. She was asked to leave the group and we stopped going after that as well. I was very disappointed that the leader was so negative towards alternatives when many in the group seemed very interested. I wish we could find a support group in our area that is not attached to a hospital. MIA is the best support group we have found for people with open minds looking for real answers. Thank you!
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Wow. That’s awful.. I guess I shouldn’t be surprised she was asked to leave, and yet, people are often at least a bit more subtle. Ugh. Well, I’m glad you both have found your way here. 🙂
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Don’t talk to me about the merits of NAMI until they stop telling me my ‘mental illness’ is just like diabetes, while promoting psychiatric drugs that cause just that (or until they stop blindly calling us ‘anti-science’ while refusing to look at the facts themselves). YES DEAR… NAMI was addressing the stigma of the society treating the mentally ill as less than people.. YOU are a valuable person and YOU NEED TO be heard , supported and find a way to help us all. OUR KIDS are literally dying . MY son lost his two best friends in the last year so dont talk to me about subtle or not addressing all cures, facts, ideas, support , alternatives. I am a destroyed parent made better BY NAMI…MY SON is an adult.. Over 100 thousand in MED bills, 5 thousand in lawyer bills fighting guardianship. NOT worked in 6 months and not alot better living with me, I get called the worse father , spit on and humiliated dailly and love him like he has a simple physical disease of the brain,,, YES ,I wish they would treat him like his condition is as simple disease and not avoid him at all costs as he will always be alone till a group like NAMI advocate . I wish they would treat him like a PTSD,heart patient or missing a leg.. . ISOLATION,DEPRESSION,HALLUCINATION,DELUSIONS are a way of life . YES we struggle to be treated just like those who should not be non funded,stigmatized, avoided, belittled and betrayed daily by society . YOU GO GIRL and right these wrongs any way you know how, and GOD BLESS .. MYSELF and others go to a dad support group that would have been outraged by any NAMI class meeting shutting down any conservative talk. YOU just dont get it. WE were crying for any other solutions having been destroyed by the MEDS effects and life’s choices given to us. IT CRUEL, HARD , and to much for parents to adress alone. WE DEAL with this . WE didnt create, control or cause these diseases just do what we feel is right for our loved ones.
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madinCanada. The Canadian version of NAMI is a threatened organization, because the ISF, which promotes nutrient therapy, is growing in strength there, if the increasing number of orthomolecular practitioners in that country is any indication, according to the ISF’s practitioner list, which lists pages of such practitioners in every province, instead of a handful throughout the country. That’s why the enthusiastic woman likely was kicked out of the group you attended; she was advocating the techniques of the orthodox group’s arch rivals.
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What does ISF stand for? A Google search gives me over 15 million hits.
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International Schizophrenia Foundation. It was a new incarnation of the old Canadian Schizophrenia Foundation, which appeared in the late 1960’s and early 1970’s. I used to be a CSF member so I could get the Journal of Orthomolecular Medicine and its predecessor, the Journal of Orthomolecular psychiatry, after I found out I was B3 dependent.
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Thanks! I will look into it.
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Regarding the woman who was talking about “diet, exercise”, supplements, yoga, etc.”, well, those are ALL either PHYSICAL activities, or else PHYSICAL substances…
ALL of psychiatric “treatment” for so-called “mental illness” is either some form of DRUGS, or CONVERSATION/TALK….
But to be a healthy person means much more than sitting and talking and taking drugs!
The “yoga/exercise” aspect of healthy living, and psychiatric “treatment”, is usually neglected….
But yeah, NAMI sux….
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thank you so very much for this article. NAMI is a big threat to people with labels and distress, especially those of us who would very much like to decline all the “help” the so-called “helping professions” have to offer, often based on horrible personal experiences.
Your mention of the “Murphy Bill” got me to thinking a bit. Isn’t it interesting how there’s a growing number of people who are absolutely disgusted by Mental Health, Inc., society as a whole seems to be shifting back towards a degree of skepticism towards all thing Mental Health, and yet…the politicians who oh-so clearly work for the 1% want everybody (and their mama) on “the miracle meds” ?
Thanks again for the informative, well-written article.
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Thanks for your post and thoughts. 🙂 I fear that we have a longgggg way to go before we can really say that it’s mainly just the politicians/1% that are pushing in the psych drug direction…. BUT I do think there’s nonetheless validity in what you say, and we should definitely be paying attention. It makes sense that it would be that way when we think of the ways in which systemic oppression works.
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Sera:
I am a parent who attended (but later dropped out of) NAMI’s ‘Family-To-Family Educational Program.’ Participants like me were each given a Second Edition version of ‘Family to Family’ written by Joyce Burland Ph.D. National Director of the NAMI’s Family-to-Family Education Program. The study guide clearly states that the development and distribution of the materials was directly funded by an ‘unrestricted education grant from Bristol-Myers-Squibb and Otsuka American Pharmaceutical Inc.”
It was very traumatizing to read controversial medical propaganda in the packets we parents were given, such as a copy of a controversial article by Daniel Goldman providing ‘irrefutable proof” that schizophrenia is caused by structural abnormalities of the brain. No opportunities to discuss the validity of this junk science was provided to parents like me who have read articles refuting this evidence. No alternative treatment modalities were discussed and no paradigm other than the medical disease model were presented as the basis for diagnosing and treating extreme states known as ‘psychosis’
Educational alternatives are starting to crop up here and there. For example, parents can take a class entitled ‘Families Healing Together’ offered by the Foundation for Excellence in Mental Health, which stands in stark contrast to NAMI’s educational program. Educational approaches which stress recovery, hope, psycho-social approaches, and the role played by trauma, grief, and shame are infinitely more helpful but are in their infancy.
I think activists for human rights in the mental health system (as defined by choices and alternatives to the medical model because how can their be rights if there are no choices?) should target national and state NAMI organizations for direct action as David Oaks and other activists did when they fasted and called for the APA to provide proof that mental illness is caused by a chemical imbalance) and seek to build coalitions with other consumer advocacy organizations who, like us, do not accept industry funding. I hope MindFreedom affiliate organizations will take the lead in organizing such actions. Since MindFreedom is one of the few consumer/survivor organizations left standing which does not receive any ‘system’ funding, it think MindFreedom is uniquely positioned to lead this effort but it would be helpful if activists who working for organizations which do accept system funding would renew their MFI memberships and/or renew their commitment to direct action.
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Hi Madmom,
Thanks so much for sharing your experience with NAMI. It’s disturbing, as so much is when it comes to them. I share your hope that some energy can be gathered to take action.
Sera
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.. ‘irrefutable proof” that schizophrenia is caused by structural abnormalities of the brain. Later it verifies the abnormalities and discusses parts of the chemical creating process..may/maynot be a facture. WE talked for two hours on different causes/ relative info.. . THE BOOK breaks chemicals and the diseases down way above all the parents heads.. IT actually does not blame one structural/chemical producing structure abnormality down but several causes, virus at the time of year born, drugs, trauma, injury, lifestyle, outside chemicals, glands, hormones, and “”” causes including genetics and hereditary factors. I met once a week for about 13 weeks… IT was a god sent to learn and how to cope, deal, and see my son in a positive loving manner. AGAIN, PLEASE FIND WHAT causes the many variations, cures, as I am as skeptical as you on DRUG companies, influence, lobbies, government, and we all had the same impression on the DRUG companies. WE all know the politics. ( WE tried to hold that in check)… WE all went out and bought LIGHT lamps for seasonal depression as one suggested as helping our depressions. WE all understood the DRUG pharma money in healthcare, legislation, party control and being very much an underdog. .
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Anyone telling you there is “irrefutable proof” that “schizophrenia is caused by structural abnormalities of the brain” is having you on. There is increasing agreement even among mainstream researchers that “schizophrenia,” like pretty much all of the DSM ‘diagnoses,’ is not actually an entity that can be scientifically defined. I believe Japanese researchers have scrapped the term altogether and are looking at multiple causes.
We do all agree that drug company money creates corruption, but it is sometimes hard to see the full scope of that corruption. Have you read “Anatomy of an Epidemic?” It will be a great education for you if you have not. It explains how the entire DSM model is built on a desire for psychiatrists to give an impression of scientific competence to a field that has never demonstrated scientific support for its models. If you haven’t, READ IT. It is essential at this point in your education.
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I created an account just to comment on this article. I have been affiliated with NAMI in some fashion for 7 years. I can assure you that I have NEVER been told which drugs to take and / or that drugs are the complete answer. In fact, I have never been told anything from NAMI about particular drugs at all. No information pamphlets on drugs… No classes on them, etc. Most of the classes and informational seminars are on subjects outside of chemical treatment. Such as meditation or CBT. Any number of other ways to treat the illnesses people suffer from. NAMI has been a great resource to my family and to me (a consumer) and aside from helping me come to terms with an illness and encouraging that I listen to recommendations by a psychiatrist, NAMI has done nothing to sell me or feed me drug information. Would like to hear your comment to this. I hope this sheds light on NAMI from an inside perspective.
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As a “consumer”, “Michael_C”, your JOB is to CONSUME as much PRODUCT as the PRODUCER can PRODUCE. And what exactly is that “product”? Well. neuro-toxic DRUGS, and so-called “services”. Drugs are drugs are drugs are drugs are drugs….. At least you don’t use the deceptive euphemism “meds”. And, as for the DSM, which I’m sure you’re aware of, – ALL of the so-called “diagnoses” in it are bogus and INVENTED. They were NOT discovered. They serve as excuses to write prescriptions, and bill for “services”. The DSM is a catalog of billing codes. So-called “mental illnesses” are exactly as real as presents from Santa Claus, but not more real. Psychiatry is a pseudoscience, a drug racket, and a means of social control. It’s 21st Century Phrenology. Of course NAMI has been a “great resource” to you and your family. You are the TARGET audience. If you don’t mind being targetted, propagandized, and CONSUMED, then I suppose you have that right. But please don’t expect the rest of us here at MiA to follow you. I have 4 decades of lived experience, the last 2, drug and shrink-free. Long-term use of psych drugs ALWAYS results in worse outcomes. You’ve only got 7 years. Wait until 10, 15, 20, 30, 40+ years…. The drugs will increasingly disable you, and lead to a decades shortened life span. To quote Kurt Vonnegut, “So it goes….”….
Respectfully,
~Bill./
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WOW >>> what a jump from support group to consumer… I created my account as I am a mature adult crying like a lil baby confused and crippled to a point of irrational though at the time. BRADFORD -You were not there. Government -not there, web sites not there.. MYSELF and a half dozen other parents questioned the book dailly and rationalized every step. NAMI WAS a god sent. I TOLD them I TOO has reservations on (( one)) drug my son was given that once taken it limited other drug choices. WE ALL MADE the best choices we could with out information, education , support and a group that gave us access to other in similar situations. UNTREATED Mental illness killed my sons two best friends in the last 1 1/2 years as self medication is alway the next best cure and usually fatal. THERE IS NO one right answer here. I follow no one blind . I AM learning, educating past NAMI , with NAMI , internet, books , and my son best hope . NAMI SHOWED me I am not alone and taught me to move forward . IT IS MY burdon and chose as the last hope for my son… THE system is broke.. The only money going into the field is PARMA,,, PLEASE search learn and discover.. groups, orgs. national mental health agencies , SAMHDA, NIMH , National mental health services, Healthzone and be educated.
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The alternative to not taking the meds though, can lead to Injury , hospitalization, incarceration, not to mention the effect on family or friends when he’s missing for more than two months and you don’t know if he’s in the hospital or jail or the morgue. My brother is incarcerated for robbery with a dangerous weapon. He went to get ice cream with a covered jar full of change which he gave to the clerk to help him count it. There was an open pocket knife in the change jar. When the clerk opened it he immediately gave it back to my brother asking him to remove the knife . When my brother did, he showed or held up the pocketknife through The service window. The Clerk stepped back, Bobby put down knife and started to try and count his change. Clerk said to get Bobby out of the way, he gave him the ice cream and Bobby went to sit down. In a few minutes he was arrested and his bond was 50,000$. This has been a terrible episode. So was the last one about 4 years ago when he almost died and spent 2 months in the hospital and two months in rehabilitation facility. And the one before and the one before. I’m sorry but I am an advocate for mandatory meds for my brother. I like him in my life. AND I like NAMI. They have been most helpful and actually, I am grateful that there is some kind of medicine that keeps him safe and alive.
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That sounds like your brother being put in danger by prejudice, not his own dangerous behavior.
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Hi Michael,
So, I can appreciate you have felt helped by NAMI, and won’t attempt to take that away from you. However, when you say this:
“aside from helping me come to terms with an illness and encouraging that I listen to recommendations by a psychiatrist, NAMI has done nothing to sell me or feed me drug information.”
I say THAT is exactly what I – and the pharmaceutical rep I quoted above – am talking about. NAMI *does* engage in overall advocate and lobbying that help drug companies directly, but more notably they push people into the paradigm that *leads* them to take the drugs…
The pharma rep’s point above was exactly that. That direct pushes toward specific drugs are NOT the most helpful approach. But that the more indirect approach of just convincing people they *need* drugs via advocacy to regard one’s self in a particular way… that’s proven quite effective.
So, I’m not surprised what you say… in fact, it fits well within what I’d expect.
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I completely disagree with you. How could one, as an organization aimed at assisting people with mental illness, in good faith, tell one of their consumers to go against/ignore the recommendations of a profession medical doctor….? It would make no sense for NAMI to say anything BUT to listen to doctors. In any case, NAMI’s main motivation is to assist people with conditions like mine. Not to treat them like a doctor would. This is why NAMI has always been forward with alternative approaches to help with various conditions that millions of people suffer from. Have you ever been to a NAMI meeting? People go off their meds all the time, with mixed success. NAMI has never pushed drugs on anyone from my experience.
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Michael,
NAMI has never pushed drugs? Hmmm… Aren’t they essentially doing that by pushing the Murphy Bill and Involuntary Outpatient Commitment?
They have also pushed ideas like that psych diagnoses are unquestionably brain diseases, chemical imbalances, and/or ‘just like diabetes’…
And, if you disagree, well, they’ve got that great little ‘anosognosia’ section on their website..
These are all pushing drugs in one way or another… In fact, they’re much more effective ways of pushing drugs, then if they literally pushed drugs in the ways you seem to be imagining we mean…
-Sera
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It sounds like you’re basis is anti-psychiatry rather than anti-NAMI. NAMI has filled a void, on the basis of demand. If you want to blame someone, you should blame the big parma directly for making drugs that people eventually ‘need’.
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Michael,
Everything I said above is quite specifically about NAMI… Everything I wrote in the article above is quite specifically about NAMI.
But you’re free to disregard!
-Sera
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It sounds like you’re basis is anti-psychiatry rather than anti-NAMI.
Nothing wrong with that if it were true.
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Michael, 30 years ago, I began working at the policy level at the NYState Office of Mental Health and first encountered NAMI, which was indeed pushing drugs and forced treatment, which they continue to do. They were responsible for the passage of Involuntary Outpatient Committment in 1999 in NY, which has hurt 1000s of people over the years. They also perpetuate the medical model myth, which says that so-called “mental illnesses” are “diseases” just like diabetes. The research says otherwise. Psych drugs, according to recent research, kill more people than heroin. Research shows that people on long-term psych drugs due in average 25 years early. And you want to defend the Big Parma funded lobbying & hate group that perpetuates this dangerous stuff? I don’t understand.
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I am unapologetically anti-psychiatry. I am also anti-alchemy, anti-phrenology and anti-irridology. Psychiatry is as firmly grounded in science as any of the other three disciplines. They have no bio-markers for their “illnesses”–despite searching frantically for over 200 years. The tests they administer remind me of Tim LaHaye’s book Personality Plus. The multiple choice quiz for Sanguine/Choleric/Phlegmatic/Melancholy. Only you won’t be drugged, fried or imprisoned for being the “wrong” personality type. And LaHaye doesn’t encourage discrimination against one or more types the way shrinks do.
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Hi, Michael!
Well, a lot of people have a similar belief about doctors always being wise and scientific and reliable. It’s a very solid cultural belief, even when evidence speaks loudly to the contrary.
Are you aware that the august Journal of the American Medical Association published an article verifying that receiving medical care kills over 200,000 Americans every year? Which makes it the third leading cause of death in the USA, behind heart disease and cancer. And over 120,000 of these deaths were attributable to properly prescribed and administered medication. A LOT of those deaths are from psychiatric drugs. The average lifespan for those diagnosed with psychotic or bipolar disorders is 25 YEARS shorter than the average American. These doctors kill people. Can you imagine a cancer drug that killed off its patients years earlier than those who don’t receive treatment?
In steps NAMI. They promote a VIEWPOINT that “mental illnesses are just like diabetes” and have nothing whatsoever to do with how people are treated or what kind of stresses they are under, or even what they eat or whether they exercise. They are “genetic brain disorders” and no one needs to “feel guilty” about the damage done to our young people or to adults who have to experience this life-threatening “treatment.” The potentially deadly side effects, though very well documented, are minimized or denied, and the supposed benefits promoted under the tutelage of the drug company sponsors.
In addition, the people running NAMI are not “mentally ill” individuals, but parents and professionals who “know what is best” for their adult children/clients, and when the “recipients” complain, they are accused of having “anosognosia” or of acting out their “symptoms” instead of listening to their views.
Remember also that psychiatrists assured us that Benzedrine was not addictive, then assured us that Valium was not addictive, then Xanax. They also assured us that tardive dyskenesia was caused by “schizophrenia” and only later were forced to admit it was the drugs. So they have a very poor track record of reliability.
So being skeptical about a doctor’s advice is not silly or dangerous – it’s very, very smart. Trusting doctors blindly, especially psychiatrists, can get you killed. But national NAMI does not appear to care much about these problems, and is all too happy to blame them, including the 25-year earlier death rate, on the victims.
I hope that clarifies why it is that I and many here trust neither NAMI nor psychiatrists. I’d be very interested in hearing your specific response to this information. You seem like a smart guy, so perhaps a bit of hard data can help you see another viewpoint, even if you don’t agree with it.
—- Steve
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Well here’s something to rebound. Wouldn’t the pharmaceutical companies want to sell more drugs? If it caused people to die 25 years earlier, then they would, from a monetary perspective, want to correct that so they can keep people on drugs for longer. I believe, and I am making an educated assumption, but I believe that one of the main reasons people with mental illness have a lower life span statistically is largely due to the high suicide rate among the group.
In my NAMI chapter, everyone leading groups or classes, to some degree has mental illness, which allows many people to relate easier to the subject as those leading have been through a similar struggle as you, the consumer. Of course, I wouldn’t want to be told by a healthy group of people, that my perspective is invalidated because I’m sick with a disease. It’s a very very tough spot to be in, because honestly, not even the medical field can agree on what mental illness is.. How can parents who haven’t gone to 8 years of medical school be any more adept to know what their child is going through. We are all just trying to fight this together, but the real killer is ignorance. I don’t mind people shedding light on NAMI’s corrupted ways. It will only foster more awareness, which is always a good thing, but from my experience, my NAMI chapter has always been helpful and never pushy, especially when is comes to discussing various medications, which has never happened in any groups I’ve attended.
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You are correct that there is a high suicide rate among the group, which is a contributor, but certainly does NOT explain a 25-year (nearly a THIRD of an average lifespan!) decline in average life expectancy! Consider also that the suicide rate INCREASES with increasing contact with the psychiatric profession, partly because of the drugs they sell. And there is no denying that antipsychotics cause an increase in diabetes, huge weight gain, and a very significant increase in cardiovascular disease. To think that these don’t increase the death rate very significantly is, forgive the term, delusional. Additionally, cigarette smoking is commonly used by those on antipsychotics to reduce the side effects (it increases dopamine, which is what antipsychotics decrease), and we all know the impact of cigarette smoking on lifespan. So indeed, psychiatrists kill people.
If you were reading the other comments, you’d see that many (including me and the author) that local chapters can provide valuable services, particularly those like yours who allow or encourage leadership from survivors/consumers.
Your last comment I agree with completely, and that is one of the huge problems we face. Without an objective definition, almost anyone could be identified with a “mental illness,” and it is also very possible to redefine “mental illness” in a way that allows the drug companies to create “science” that supports their drugs. They do this by seeing what the drug does and then defining a “mental illness” based on whatever “symptoms” it “treats.” “Social Anxiety Disorder” is one such fake “disease” that didn’t exist before they decided to market Paxil to “treat” it. Juvenile Bipolar Disorder is a similar scam, long since proven to be utterly bullcrap by psychiatry’s own researchers, and yet many youth are still “diagnosed” with this non-existent “disorder,” and given these life-shortening drugs to “treat” their inconvenient childhood behavior.
8 years of medical school is actually a big DISADVANTAGE if you are being trained in things that are absolutely false or are based on false assumptions. Hence, it is actually often parents who are more adept than doctors at sensing what is really going to be helpful, but in any case, the invalidation of the client’s viewpoint is ultimately the most destructive thing that can be done if we have any hope of recovery, yet such invalidation is the core of how psychiatry is practiced today.
Have you read “Anatomy of an Epidemic”? I believe you really would benefit from reading it if you have not. It would help further your understanding of where this big protest energy is coming from. It seems you are not at all far away from my views on what is helpful, though our views on whether national NAMI can provide it seem to diverge.
Thanks for the rational exchange!
— Steve
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aside from helping me come to terms with an illness and encouraging that I listen to recommendations by a psychiatrist, NAMI has done nothing to sell me or feed me drug information.
Let’s keep it real, though; psychiatrists almost always push drugs (and/or electroshock). It’s all they have. Considering your problems to be an illness leads you to psychiatry, and psychiatry leads you to drugs. Therefore, NAMI leads you to drugs.
I’ve been to a NAMI “peer support” group once and it was heartbreaking. The facilitator mostly read from a script as he shook from tardive dyskinesia. It was all about encouraging us to accept the reality of our “illnesses,” to follow the psychiatrists’ orders, and not to be afraid of “going in-patient.” In other words, the message was that we were sick and needed to take our “meds.”
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You’re right, “it’s all they have”… For the most part. NAMI, in no way has led any of my constituents to drugs. The doctors have. My chapter of NAMI has always pushed other alternative treatments actually. So maybe it’s just where you live where there are no other options, but drugs. Here is the SF Bay Area, there are plenty of other options to consider.
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To Micheal C., speaking for myself after having experienced Assisted Outpatient Treatment which is really forced drugging with geodon in my case, and knowing that they pushed for a law that now increases the incentives for states to use forced drugging for people like me, yes that is what NAMI wants for us.
I feel that I have the human right to say no to a drug that caused me to have akathisia and tardive dyskinesia.
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“The best way to control the opposition is to lead it ourselves” said Vladimir Lenin.
Thats the NAMI method.
Where was NAMI when boys were growing breasts from Risperdal ?
Where was NAMI when Eli Lilly was busted in the Zyprexa scandal ?
What does NAMI have to say about the abusive psychiatric inpatient hellholes run by Universal Health Services ?
No matter how outrageous the crimes against people accused of mental illness perpetrated by the psychiatric or pharmacuitical industry NAMI is SILENT every single time. Total silence.
“The best way to control the opposition is to lead it ourselves” and who leads in NAMI funding ?
Love it, hate it or even not care about it but Alcoholics Anonymous has been around much longer then NAMI its funded by dollars in the basket. Go to a business meeting unlike NAMI there are no secrets. X amount of money comes in from the basket and coffee and X goes out for expenses.
Imagine if AA decided it was against the human rights of people suffering from alcoholism and went to Washington to get laws removing the rights of people suffering from alcoholism. How many dollars would go in the basket following that ? Zero real quick.
NAMI needs to go so something real can maybe take its place but that pharma and hospital franchise money keeps it going.
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This is a great point. They’re not all about trying to help us. They get behind laws that take away our human rights. The right to decide whether we want to take drugs with horrible side effects. These laws are unconstitutional. Where is the ACLU on this? We need to start challenging these laws in court.
The only thing that made the s.m.i. clinic back down in my case was an attorney my parents hired for me. This is their Achilles’s heel: what they are doing to us is ultimately unconstitutional.
This is really no different than a woman’s constitutional right to an abortion. This is my body and I should have the right to decide whether or not I want to put toxic drugs with harmful side effects in it or not.
We need to get a class action lawsuit going.
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I think it’s also important to clarify that not all local NAMI branches are as bought out as national NAMI. NAMI Santa Cruz (or maybe Santa Clara) used to have an awesome website with lots of empowering articles and discussion boards. But they don’t appear to any more.
I encourage you to look on the national site and see how many times they talk about “biological brain diseases” and how infrequently traumatic experiences like child abuse are emphasized as causes. See how supportive they are of forcing “treatment” on the unwilling and how often they talk about “anosognosia” and how little they talk about hearing voices groups and peer support (except in the context of supporting peers in following their psychiatrist’s orders). They have improved somewhat since the late 90s when I first encountered them, but the national website is loaded with inaccuracies and power trips that have nothing to do with those who willingly or unwillingly engage in “mental health services.” The unquestioning support for enforced outpatient “treatment” (aka forcing drugs on people who aren’t even endangering anyone just because the psychiatrists think they MIGHT some day be dangerous) should be enough to convince any objective person that they are at best very far down the wrong track. Looking at their Big Pharma connections just explains why.
So yes, lots of people have found local NAMIs helpful, though lots have also found them awful. But national NAMI does not represent the “mentally ill,” it represents their family members and the pharmaceutical industry. Which is a VERY dangerous combination.
— Steve
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Steve,
I agree with your comment.. .AND, I would add a point which I also tried to make in this blog (as well as – perhaps more strongly – in my Autism Speaks blog): While local chapters may sometimes be miles better than the national NAMI, at least part of what that accomplishes is to give national NAMI an opportunity to say ‘see, we’re not so bad!’ and distract people from a very serious problem. In other words, it’s great when local NAMIs are better… great for those local people… but still, in some ways, potentially harmful to the bigger picture.
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Michael: I taught NAMI’s Family to Family for 8 years. The curriculum is standardized to the point that teachers read the script from the manuals. And we covered loads of meds info. NAMI is also where my husband learned to tell me, “Take your meds as prescribed or I will leave you.” (In the end, he decided he was “a woman in a man’s body” and I moved out, but that’s sort of another story …) After I left him, I’ve been able to titrate down my dosages with the help of a different MD in a region of the country that prescribes more conservatively. Now I take 3 pills a day instead of 15 (!!!) and am again professionally employed. So I’m not sure what NAMI course you could have taken that didn’t spend loads of time reviewing how different meds function, but it’s not the one I taught.
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I too am on very low doses of medication. According to my psychiatrists, I’m ‘lucky’ in that way. I ascribe it to my effort, personally, but still, out of all of them, he is willing to help me reach sub-“therapeutic” level of medication, which has worked and continues to work for me. The chapter of NAMI that I work for is in the Bay Area, and, yes, during some of the classes, people “read” through the binder’s information, but people are free to accept or reject the info. I’m no dummy and when I hear something out of place, I know it. The class I have taken is for the Peer to Peer program, which I have spent the last year doing with great success for my Peer Pal. I consider NAMI, just like any other company. Look at Chevron… Polluting the planet, but still people need gas, right?! I feel like NAMI fills the void for questioning parents and possibly some individuals who suffer from some degree from mental anguish. You can use their services, or find another gas station.
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I consider NAMI, just like any other company. Look at Chevron… Polluting the planet, but still people need gas, right?!
No, people need better public transportation and renewable energy. This is actually a pretty great analogy, though. Psychiatry and Big Pharma – and by extension, NAMI – are standing in the way of people getting actual help with their problems, just as the oil companies are standing in the way of all of us getting better public transportation and renewable energy. And both problems are caused by the profit motive.
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That’s capitalism, my friend.
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Precisely.
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Last time I checked automobile companies weren’t crippling people to ensure car sales or banning bicycles through smear campaigns!
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Thanks, messenger48! I tried submitting one article to Counterpunch, and didn’t get through. (I think the first time is always the hardest!) I’ll have to try more. I’m certainly interested in reaching a broader audience. 🙂 Thank you for the reminder to give it a go.
-Sera
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Michael,
Unfortunately, part of NAMI’s gig is to suck up all the air so no other ‘gas station’ is able to grow. It’s not as if they just benignly offer supports that people can take or leave… They are a part of a machine that conveys *one* way of thinking about such distress (intertwined with capitalistic interests), that lobbies for force and money to be taken *away* from alternatives and put into more ‘clinical treatments’ (that’s, after all, part of what the Murphy Bill aims to do…), etc. etc. etc.
-S
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Sera: I enjoy your no hold bared approach. MIA contributor Bruce Levine posts at Counterpunch, arguably the most free-wheeling website on the Left. Have you tried posting your articles outside of anti-psychiatry and peer support circles?
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(In the end, he decided he was “a woman in a man’s body” and I moved out, but that’s sort of another story …)
Yes, that is an entirely different story, and it’s unfortunate that you felt the need to include it here. That said, congratulations on your successful tapering and new employment.
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“And besides helping me come to terms with my illness”
Therein lies the entire problem, the fact that they are willing to convince you that you are ill. What we deal with is not an illness.
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NAMI is corrupt. Psychiatry is corrupt. Pharmaceutical companies are corrupt. All of them must go. Slay the Dragon of Psychiatry.
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Thanks for reading and commenting, Slaying_the_Dragon. I agree that corruption abounds.
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This is the best way I know to communicate to Sera Davidow. Sera, I’m requesting that the MiA site admins give you my email, so you can contact me directly. Last week, the local CMHC hosted a showing of “God knows where I am.” It’s the story of Linda Bishop, and it was hideous propaganda. The film makers were pigs. Yuck.
But anyway, I saw the piece on you in “The Sun”, which I purchased at the local Co-op. It was excellent. After I read it, I was able to give it to Mr. Phil Wyzik, who is the Director of “MFS”, – Monadnock Family (…and mental health…) Services. He actually READ the “Sun” piece, and was impressed. He mentioned your use of “extreme states” as being particularly eye-opening for him. I think he would be VERY receptive, if you contacted him.
Also, I spoke at a recent Keene City Council meeting, against the abuses of some of the local “agencies”, MFS chief among them. We’re at a unique point in time. We can knock the system back here, if we work together. RSVP? PLEASE!?… ~Bill./
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Hi Bradford,
Actually, just for your reference (and anyone else’s), if you go to ‘About’ in the Mad in America drop down menus, and then go to ‘Contact Us’, there’s a drop down menu from which you can choose any Mad in America employee or author and send an e-mail.
People have definitely contacted me that way! I also don’t mind giving people my e-mail, but I’m reluctant to post it here for spam purposes.
I’ll also be upfront that while I do my best to respond to all e-mails I do sometimes read something and then lose track of it, if I can’t respond right away, and so sometimes it may require people to ‘nudge’ me to bring me back around…
I heard someone else talking about that film, but I at least *thought* they responded more positively to it.. I don’t know much about it myself at all.
In any case, I’m realllly overwhelmed in work life right now, and am headed out of town for three weeks mid-summer, but I’m willing to give it a go, if you think I can somehow be useful up there!
-Sera
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For many, many years, the most active local NAMI member was a father who sexually assaulted/molested/raped his young daughter. When she got old enough to report what he did to her, he took her to a psychiatrist, had her labelled, “diagnosed”, and put on heavy psych drugs. All so nobody would believe her. “Oh, she’s just “mentally ill…”…. Some of NAMI’s most tireless workers are covering up their own CRIMES, and further victimizing the VICTIMS. With the complicity of psychiatry…. NAMI is EVIL….
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Yes. Either it’s, “Billy only says we beat him. He’s crazy. Don’t believe him.”
Or, if people catch them in the act it’s, “So what if I verbally abuse Sarah and put her down in front of friends? She has a screwed up brain, so it’s not my fault she’s crazy.” (Not like WE feel things anyhow!)
Either way, NAMI enables abusers!
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Thanks so much for this Sera! I think you’re right — however many good people and even “good chapters” there may be at the grassroots, the national organization is so thoroughly captured by the pharmaceutical industry that it’s hard to even wrap your mind around. As a matter of fact, the industry relies on NAMI to speak for them, making claims for their products that they can’t legally make, and saying things that would be spotted as self-serving if the industry said them.
Here’s the link you may have been searching for BTW, to get NAMI’s major corporate contributors:
https://www.nami.org/About-NAMI/Our-Finances/Major-Foundation-Corporate-Sponsorships
Their biggest contributor of late — $575K to be the national Premier Sponsor of NAMI’s fundraising walks — is Alkermes. I know. You never heard of it. Their business? Depot injections — which in 90% of cases are used for involuntary treatment. Alkermes makes Aristada, a 90-day depot Abilify injection, and Vivitrol, a 30-day naltrexone depot injection for opioid addicts which is being heavily marketed to prisons. They also own the patents on depot-injection technology used by several other companies. Prior to that the National NAMI Sugar Daddy Extraordinaire was Otsuka, makers of Abilify and Abilify Maintena (depot injection).
The scandal-plagued for-profit hospital chain UHS (Universal Health Services) has given National NAMI $85K a year for the past few years. Their local hospitals have also formed close relationships with NAMI in numerous cities. In short, NAMI’s drug-money problem has not eased up at all in the past few years — if anything it has deepened. And it needs to be called out. They are an 800-lb gorilla in the media and PR field, with an awe-inspiring power to promote certain agendas and shut down others.
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Thanks, Johanna! You are helping do exactly what I’d hoped would happen.. Add additional details and evidence in the comments section. 🙂
It’s amazing how attached people remain to ignoring what seems so very obvious with all this…
-Sera
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I am just checking in and sorry commenting before reading the entire article but I have been on the NAMI website forums and its just a horror show.
It was even worse before the new site where they seem to have erased the years and years of posts.
Its always the same thing “Psychiatric drugging has done nothing but make my child worse but YOU should keep trying it on yours”
Another group seems to be taking up the child drugging market https://www.understood.org/en
NAMI seems to be in charge of human rights removal in adults accused of mental illness but this “Understood” website is doing the same crap and the ADHD forum its the same horror show with “psychiatric drugging has done nothing but make my kid worse but YOU should keep trying it on yours”.
WTF if 9 in 10 testimonials on child drugging are nightmare wake up, it is a sucker bet !! They cant see that.
I am an adult who survived psychiatric hell and when I read those forums the drugs and dosages they are inflicting on these kids I just cringe. And its so obvious they don’t know WTF they are doing the drug combos inflicted on some of these kids its like they rolled dice to pick them out cause they make no sense.
This website Understood is flying under the radar and I think MIA should start calling it out. Its the same sneaky approach to pushing drugs on kids but the website designers I have to say did an very nice job making it look pretty and inviting and helpful and caring.
I will go further and say they did an awesome job at making it look pretty and inviting and helpful and caring but they are same snakes and regulars around here will easily see the same old sneaky marketing methods used get as many kids labelled and drugged as possible.
I lightly researched them and the dirt is miles deep. I vote for Sera to make Understood.org her next article on MIA.
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Hey, The_Cat… I’ll have to check them out. I’m not familiar with them! Sera
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Frank is on target about making NAMI a focus of any eventual move we might make as a movement, which might be more personal and directly confrontational, and less symbolic than simply shouting outside whatever opulent palace the APA is inhabiting during its annual corporate celebration.
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Any ideas?
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Thanks Sera for this and all the comments.
I originally as a professional was turned off by NAMI but felt badly. This was before trauma and generational trauma was really talked about. Then when I allowed myself to be pushed in the system I felt I had no where else to turn to in processing my own trauma. It was not helpful and I discovered in my locale MAMI had over run the narrative. I went to one walk it was small and ran into other professionals who said they came out of pity.
However the hospitals and social service agencies were big time supporters.
Management and administration love this philosophy even as you know Sera journalism folks do not question the narrative.
I have had NAMI folks come to a church Reiki healing volunteer project and proudly spout the propaganda.
I thought the church was progressive but it had its NAMI ties.
Open AA meetings are more real about emotions and issues with trying to get help with things other than meds. Old timers were no meds then the wave of folks made it so they too were pulled in now it seems like they are more more open.
Best talk on suicidal thinking was at a alanon meeting- go figure.
I would suggest folks read Jane Mayer Dark Money because I think that is part of what we are dealing with.
My concern for myself after my forced hospitalization is safety.
I keep looking for a good place to move but fear doesn’t strike out yet.
So speaking out in my local is fraught and wrought. There are supportive folks but in these times I just don’t know. The worst part is I have so much to offer. I feel my insights and gifts are being wasted and diminished every day.
In the old days there was so much more latitude and openness to difference at least when I was a teen.
I think a buddy system and use of a 12 step type of narrative might work
Telephone trees or email chains.
One trouble for me is that I feel I have been burned by reaching out and I am unsure like I guess many others are which folks are safe.
The best memory I have ofvrecent times is going to a panel of self labeled autistic adults. It was held at a center developed and run by parents. One of the speakers ended by saying and asking why there were not autistic folks on the board and why they all couldn’t have more of a voice! Yes! She spoke out and received a round of applause. The panel was organized by an advocate coach who like me when I worked felt folks sometimes need help but they should be in charge and take flight on their own wings.
Fear has continued and forceably been instilled in our narrative by others.
This has made it doubly hard to speak out and be listened to.
I also don’t want to burn down bridges for those in NAMI who just need open eyes and ears.
Theatre folks might be a way to get the word out with new works with talk backs . You don’t get that with movies.
And we also have to be open to all the isms that are inherent in the system and for me in my perspective.
Sometimes I don’t see all the ways I have lucked out.
And not to shut down. Sometimes hard not to do.This dialogue has been great. Thanks to all.
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Thanks, Catnight, for all your thoughts.
You mentioned a church you thought was progressive… I think one of the things we’re up against, is that people who are generally ‘progressive’ see ‘reducing stigma’ and increasing ‘treatment accessibility’ *as* the progressive things to do, without ever really stopping to understand that all the ideas that underlie those things are decidedly *not* progressive at all. It’s a huge part of the struggle.
Sometimes theater pieces help, and there’s been the occasional good media piece (this for example! http://thesunmagazine.org/issues/496/an-open-mind), but *so much* that is geared toward making people think is just going out to the same audience as always.. So, part of the challenge is not just how to construct those pieces, but to find a way to expose people beyond our own bubble to them and *then* have those dialogues. Such a complex web to sort out…
-Sera
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Lots of ideas, Sera. First we need some kind of unified survivor-led anti-psychiatry movement capable of encompassing the great range of political perspectives characterizing those whose oppression by psychiatry is the common denominator.
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Hi Sera.
Thank you for writing this article.
I was an active volunteer and a board member with NAMI for a few years. I stepped away when I realized just how drug and disease brain oriented they are.
Sometimes when I think of my local chapter, I think of a couple of demotivational sayings I once read; “None of us is as stupid as all of us” and “Never underestimate the power of idiots in large groups”.
I’ve found with my fellow board members, if I engaged one on one, they would consider another point of view. Whenever we met at a board or general meeting, forget it. I’ve met brick walls that have more give.
Same thing with several members. One on one they would listen to reason. In a large group with fellow NAMI mommies, not a snowball’s chance.
We need more people who are willing to stand up and speak out about their horrific experiences with this organization. I had some drag down knock out fights with the local chapter prior to stepping away. Sometimes I feel like the only voice of reason in the county where I reside.
I really appreciate your article. Thank you for stating the facts about NAMI.
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Hi Christopherj,
I really appreciate your sharing your experience! What you say makes a lot of sense… about individuals verses groups. It’s frightening in its way, but if we look at history (of all sorts of things, not just NAMI), it makes all the sense in the world.
-Sera
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Thanks for what seems like a constructive and fair way to get us to consider the organization. You laid out these facts and are working to get accountability. I hope members of NAMI, see that you are not burning them down, rather than getting them to be more accountable. So thanks.
Harvey Rosenthal, from New York Association for Psychiatric Rehabilitation Services.
shared this article from the New York Times https://www.nytimes.com/2017/05/24/health/mental-health-czar-elinore-mccance-katz.html?_r=2 explaining how the Republicans and Trump, and endorsed by NAMI – a new mental health czar for mental health reform, who is some kind of recovery model skeptic. I realize there are lots of skeptics on this model, but at least there is a general progressive direction with it.
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Hi BillDare,
Thanks for reading and for your comment. Yes, there’s lots of articles and fear circulating with Elinore, with the potential new appointments to the NAMI national board, and with so much else. Not too sure where it means we’re headed, or what conversations we might be having in a year, or two, or five as a result…
-Sera
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Hi Sera,
Thank you for this much need summary about NAMI and other big mental health organizations’ ties to Big Pharma. As a peer, a parent (who helped to successfully keep her young adult son out of the system 3 years ago when he had what he called an existential crisis at the age of 19) and as a person working as a peer-professional leader in the system that you describe, you have again given me much to think about. I keep hoping we can make change from within, but it reminds me of trying to make change within our political structures that are so controlled by Big Money and lobbyists. My eyes are open and I hope to either find real value in my work to create true alternatives in the system or find other work. Thank you for all you do to light the way.
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Thanks, Truth. I don’t blame you for wanting to make change from within, and if it were merely a matter of opening people’s eyes to different information (rather than getting powerful entities to give up a lot of power), I might be more hopeful about it. I hope your alternative efforts are successful!
Sera
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Thank you for your community service in challenging NAMI corruption; however, I disagree with you, Frank and Oldhead about making NAMI a focus of criticism. Our society holds medical science in highest esteem; it seems ill-advised to focus criticism of mainstream “mental health” care at NAMI for advocating support for medical science (and their “medicines”).
I contend that the harm caused by mainstream “mental health care” can be directly attributed to legitimized pseudoscience: psychiatry accepted as a legitimate medical science. Medical schools are having problems with students who “bash psychiatry as not real medical science;” these students are our greatest allies. Medical schools legitimizing psychiatry is our greatest and weakest enemy since they pride themselves on real science.
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Steve,
Fair enough. This whole science conversation is an interesting one… How easy it is to discredit actual science as anti-science when it simply doesn’t fit with the power structures and dominant beliefs…And how hard it is to get people to listen to the *actual* holes in the ‘science’ that supports them.
Sera
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I disagree with you, Frank and Oldhead about making NAMI a focus of criticism.
No idea where you’re coming from with this, though I suspect that you think that this is an argument about good vs. bad “science” going on here, and that the most logical side wins. This disregards the fact that psychiatry is primarily about social control and domestic repression, and that NAMI is probably the most effective (ostensibly) non-governmental organization responsible for enslaving people to psychiatric drugs and the corresponding ideologies of self-hate (“diagnoses”), which it encourages people to internalize. Psychiatry will only go away when it is rejected by those it professes to serve. NAMI is there to solicit “consumers” of all this. Why in the world would it NOT be a primary focus, not for “criticism,” but for concerted ACTION?
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Thanks Sera for updating us all on the very serious problems with NAMI.
One thing I’ve done in the past is examine some of the misinformation NAMI puts out about Schizophrenia” – see my article “NAMI Lies” at http://recoveryfromschizophrenia.org/2011/12/nami-lies-a-brief-analysis-of-nami-sponsored-misinformation-about-“schizophrenia”/
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I’m new to this website but I’m going to tell everyone I know about it. The more we get this info out the better.
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Thanks, Ron! I wish there were some clear way for us all to get what we’ve written to show up on the Google searches!!! For all my poking around in writing this article, I didn’t come across your or so many other articles that are out there.
-Sera
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Sera, I’m assuming that someone is doing search optimization for the various folks whose posts are hard to find and they’re still difficult to locate?
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Carrieb, I am definitely no expert when it comes to search optimization, but I’d like to become one… I think it’d be good for our community to learn far more about that. As far as Mad in America goes, in the background they are paying attention to ‘SEO’ ratings which help articles rank higher… I always make sure my SEO rating is ‘green’ (good to go!) before I submit it for consideration, and I know there are Mad in America staff that will help with that if the author isn’t familiar with the process. And yet, that’s certainly not nearly enough to compete with NAMI just yet!
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When I was a NAMI zombie I actually applied for the Eli-Lilly grant. It had been expanded to include psych drugs besides clozerol. I certainly was drugged and compliant! I was “high functioning” or intelligent too. Psych staff would yell at me for bringing books to group or asking the wrong questions. They don’t like questions from nuts even if you buy into psychiatry as a legitimate science–as I did.
My question is how has the scholarship fared? If you’re drugged up–as they insist–it’s nearly impossible to go to school. I wouldn’t be surprised if, due to the high failure rate of the people who receive it and lack of applicants who think they can better themselves, they quit awarding it.
The Mental Illness makers really don’t want you to succeed anyhow. The LAST thing they want is for anyone they “help” to get better and lead a healthy, productive life. If they knew how, they’d probably apply electrodes directly to our brains to wipe out our literacy skills. Or, better yet, drug us into permanent comas!
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It’s a good question! I wonder if there’s a way to find out what became of the scholarship…
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My guess is it was dropped–very quietly–due to lack of success stories. If there were more than one or two of those, they would be sure to parade them about as mascots and widely publicize the benefits of the scholarship. That way they could milk it for PR value, since that’s what it was all about.
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Nice to see another article from you. There are a lot of rural counties that only have a Nami or dbsalliance or they may not have either as an option.
You do get a lot of recovery minded people in the country.
Absolutely other natural community support group options would be a good thing.
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Since when has NAMI been about change? It’s all about control and selling drugs. Telling folks they’re worthless and hopeless. That they will always need drugs that make them sick and mentally disabled–in my case more out of touch with reality than when “treatment naive.” If you die from the treatments NAMI doesn’t care as long as you die drugged.
As far as adversaries go NAMI made the choice to be a hate group. You’re only welcome as a sort of pet or mascot. As a worthless “consumer” you’re a nonperson and have no voice at all. The NAMI mommies run the whole show. They lie when they say they’re against “stigma.” The truth is they do nothing but promote stigma and hired Jaffee to launch a smear campaign against the “mentally ill.”
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Oh and also I’m one of the “good boys” Sera referred to in her Spoiling Split: Hollywood’s Latest Run at ‘Alternative Facts’ article.
Perhaps I would look at your articles more carefully if you didn’t condescend me.
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Pat,
I spent some time trying to figure out what you mean about ‘Split’, since I never actually refer to anyone as a “good boy”…I think you must mean this passage:
First you have the goodhearted soul loved by all (or at least most), but who inevitably slips up every now and again, falls off their drug regimen and gets at least a tad out of control… Perhaps all in effort to provide a sort of ‘Public Service Announcement’ about just how bad it can get when one is so ‘non-compliant.’
Maybe not? I’m not sure. I guess, if you mean that passage, I think you may be misinterpreting the point. The point wasn’t to put down people who actually have that experience, which is valid, but to put down the use of that experience as a boiled down stereotype used to scare everyone else into never trying to withdraw from their psychiatric drugs.
I feel like there are a lot of times when you are misunderstanding what is being said, or reading a lot more into it… Not just here – where admittedly my sarcasm and ‘snark’ are turned on high a lot of the time – but in other settings and with documents and conversations that aren’t mine. I think you have a lot to offer from both your own experiences and your work, but I’m left wondering why there’s such a barrier to simply understanding what’s being said…
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I hope you guys win and get everything you want.
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Gee that’s great, thanks for feedback.
I try to be an advocate and not an adversary. For me it works much better.
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Sera, thanks so much for calling out the phony definition of anosognosia used in NAMI (which also appears in many books as a “standard symptom” of many mental illnesses. For anyone else who’s curious, here’s a medical dictionary definition, as Sera references http://medical-dictionary.thefreedictionary.com/anosognosia
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Just remember boys and girls, if she says she’s not a witch that means she’s a witch. Cause only a witch would tell such a horrible lie!
That’s what I think about agnosognosia. All about control. Like how the Romans branded naughty runaway slaves.
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Thanks for adding the formal diagnosis, Carrieb! It’s so frustrating to me that NAMI not only mentions such misuse as valid, but gives it its own section on their website.
-Sera
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Oh wow, I just went to that link and read it. They were saying that about me at the s.m.i. clinic. They were completely misusing that term.
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Most fascinating article and commentaries. For those interested in exploring additional references detailing the psychiatric abuse of human rights in every area of society, one can review and download many booklets and other references from Citizens Commission on Human Rights of St. Louis at http://www.CCHRSTL.org.
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Thanks, CCHR. Unfortunately, I worry your posting here under that name and promoting that website will suggest to people that this article is somehow related to Scientology, given that CCHR does seem to be linked. I do, at least, want to be clear that what I’ve shared here in this article is actually independent of any CCHR research, and includes sources like Mother Jones, New York Times, and even some very conservative sources like Pete Earley and DJ Jaffe. I don’t mean to suggest, either, that CCHR doesn’t include some valid and independently findable research, as well… But I do worry about the motives that are at the roots.
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It took me so long to realize that the psychiatric community in general was not doing what was in my best interest when I was diagnosed with schizophrenia and subjected to forced drugging. My well meaning but hopelesly misguided parents thought they were helping me by pursuing the euphemistically shrouded term Assisted Outpatient Treatment. When I complained to them about my symptoms what I now know were the side effects of the meds– akathisia and tardive dyskinesia– my parents were told that these were all just manisfestations of the brain disease Schizophrenia. They attended a local support group aranged by NAMI that was adamant that I must always take my meds or else the brain disease schizophrenia would continue to progress and I would get even worse. And they made it clear to my parents that I was not to be listened to or taken seriously at all because I was crazy after all. After the psych nurse at the cheap s.m.i. clinic I attended increased my dosage of geodon to the max, I ended in the E.R., and a regular nurse told me what I was experienced was caused by the meds. I then started to research the side effects of geodon online and found so many people who were experiencing the same thing. After a lot of discussion, my family finally decided to help me get off the meds. They ended up hiring a private attorney and the local s.m.i. clinic didn’t want to pursue it in court against a real private attorney, so they dropped me from assisted outpatient treatment. And then I had to go to a private psychiatrist who helped me taper down off the meds. I still got withdrawals, but now I am finally free from the horrible meds. I am still mentally ill, but I know how to cope with it now without resorting to drugs. They need to remember that there was a time before all these meds, and many people who had schizophrenia survived the disease back then without the meds.
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Hi epthe,
Thanks so much for sharing some of your experience. The involuntary outpatient commitment stuff is *so* short-sighted… So limited. So harmful. I’m glad you had the support you needed to find a way out… I wish more people have access to what you did to help push for more options!
-Sera
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Epthe
Yes, before the advent of the drugs about 60% of people recovered from what the system likes to refer to as “mental illness”. About 30-35% of people didn’t seem to be able to make this move. But the amazing thing is that many people had only one more occurrence while many never experienced anything after the first episode.
Of course the system doesn’t like to talk about these statistics since it’s very embarrassing that today’s recovery rate is only about 16%. If the drugs are so good and the treatment is so wonderful, why isn’t there a better recovery rate?
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For my part I never was psychotic–till psychiatric drugs got involved. I no longer am. As long as I remain drug free it’s a safe bet I won’t hallucinate.
I want to write a mainstream novel about a NAMI mommy and her complex motives in “helping” her unhappy son. I will start a forum thread about this project.
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BC Canada’s equivalent to NAMI is the British Columbia Schizophrenia Society (BCSS). Please search the links between them and Otsuka Pharmaceuticals. Same story: BCSS is strong lobby group for discriminatory mh acts which deny mental capacity, legal capacity, informed consent and promote forced drugging, disease vs. psychosocial model, and allow the “sane” to control finances and make decisions for others about where one is allowed or not allowed to live. Sad that treatment advocacy groups can’t see that their expensive media campaigns of fear and discrimination ensure the failure of their expensive “anti-stigma” campaigns. Lots of waste.
A nurse who advocated in the early 1980s for a shift from the medical to the social model of support for children labeled with cognitive disabilities, described parents who were so afraid to lose the medical institutions and treatments that had housed and raised their children. Some parents fought for the continued use of these hospitals and their methods such as using electric cattle prods to “successfully” teach their children skills. People are always afraid to lose what they have, even if what they have is not good. This is happening now. Maybe sometime treatment advocacy people will shift their thinking and employ some of that imagination, which so much of their literature decries, to imagine something more humane than the equivalent of electric cattle prods to support their unruly family members. Then, perhaps, they can consider giving up their reliance on forced psychiatry: depending on police and doctors to use the restraints, isolation rooms, involuntary ect and forced injections of blunting and potentially hazardous drugs to control their unruly family members.
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Thanks, Diana. Indeed, I do think fear of giving up control and all that people know is a part of what is happening for so many people.
Sera
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Sera,
Great article; I enjoyed reading it!
The penetration of drug money and associated medical model terminology into NAMI is so complete and deep that it’s hard for many inside the organization to know what has happened to them… it’s like, how does a fish know it is swimming in water? It is all it’s every known. From such a fish’s perspective, there is no sense or memory that things could be radically different; for example, that a mental health organization could be independent and could act as an ethical check on the excessive drugging pushed by the corporations. Instead, it’s all about “confluence of interest” (to use the unforgettable term used by a psychiatrist whose name I forgot, but who tried to rationalize drug money “conflicts of interest” as confluence as interest, to Marcia Angell’s disgust).
The bottom line is what you said: Nami and drug money go together like:
– a zebra and its stripes
– a cheetah and its spots
– a fish and water
– a Somalian pirate and a rubber dinghy
–
There is no way for Nami to change, because its growth and function has been entirely predicated on ingesting poison – i.e. drug money with the implicit expectations that drugs and the disease model be promoted. To let go of this poisonous attachment, Nami would have to radically shrink and scale back its services. Those running the organization prefer self-delusion and maintaining the status quo.
In this regard, the process of trying to oppose Nami and the disease model reminds me of my favorite quote from Macchiavelli:
“It must be considered that there is nothing more difficult to carry out nor more doubtful of success nor more dangerous to handle than to initiate a new order of things; for the reformer has enemies in all those who profit by the old order, and only lukewarm defenders in all those who would profit by the new order; this lukewarmness arising partly from the incredulity of mankind who does not truly believe in anything new until they actually have experience of it.”
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Matt,
Yes, it does seem invisible to many who are on the inside of it! I think even of commenters here who are simultaneously challenging the validity of this article’s claims, while unknowingly pointing out some of the fundamental pieces of exactly what the article says makes the whole system tick along. It does all end up feeling a bit like asking the organization to change is like asking a human being to learn to not only live but prosper without food…
Anyway, thanks for reading and commenting!
-Sera
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Martha Rosenberg rips off another expose of big pHarma
http://www.counterpunch.org/2017/05/30/once-again-mainstream-media-does-pharmas-bidding/
the last sentence is gratifying…and pertinent to this blog.
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https://itunes.apple.com/us/podcast/968-kelly-brogan/id360084272?i=1000386014939&mt=2
you guys would like this link~ joe rogan brings on a psychiatrist who’s not part of the norm… great pod cast
it mentions a book called Anatomy of an Epidemic. Im going to read this soon
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Hi Sera! I skimmed your article, and we may agree that NAMI is very corrupt. But Nami isn’t the lady from League of Legends. That’s a different Nami. The Nami you posted is a character from the Japanese anime One Piece. She does love gold because she’s a swashbuckling pirate and naval navigator. But she also loves freedom on the high seas, so it’s not exactly the same.
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Hey Codeman, Yeah, I found that out shortly after I wrote the article, but I figured I’d just let it go till someone mentioned it 😉
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Thanks. 🙂
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Hey, Sera! So good to re-read this whole article, and especially the comments!
KEEP UP THE GOOD WORK!
~B./
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You are 100% troll.
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I personally do not like NAMI and have never felt that I benefitted from their organization. That being said, I do feel that mental illnesses are often biologically derived, and medications for some, are helpful. I’m somewhat confused by some of the comments here. Many of the comments seem to be very anti-science (not just anti-pharmaceuticals). Medications have many times helped me to return to my baseline. I feel most mental illnesses do stem from a chemical imbalance. That doesn’t mean that ALL imbalances need to be treated with pharmaceuticals, but for some people who suffer, medications have been a true “game changer”. I do feel that certain environmental influences, like abuse, or a traumatic event, etc. can cause the brain to “misfire” and become imbalanced. The brain is like any other organ and with repeated stress to it, certain pathways can be formed or activity can be diminished that can cause true dysfunction and disability. My MRI imaging actually showed areas of my brain that were more “lit up” than in a “normal brain”. When I am episodic, non-medical approaches have not worked for me. I do not separate my brain chemistry from the experiences or stressors in my life, but see the interplay between the two, as both impact one another. We all are part of a system of continual flux. Those who have a genetic predisposition or who endure trauma as a child more than likely experience chemical changes in their brains that may cause increased hormones and adrenalin that later in life result in illness or disease. I feel the process is complex and something that cannot truly be articulated well here. I still feel pharmaceuticals should be a last resort and if possible something you eventually can live without in time. But for some, like myself, they are necessary. I seem to do better with a mood stabilizer overall. If I am not on a medication I am more likely to quit jobs, have suicidal ideation, and feel truly dissociated. I’ve had 30 years of therapy, hold an MS degree and will STILL argue that medication are truly helpful for ME. I feel stigma is created when others deny mental illness and insist it is something that can be easily controlled with certain behavioral “approaches”. Where I can agree that trauma can be a definite trigger or even a cause, once the brain becomes truly imbalanced, it can take medication at first to even get to a point where therapy and other approaches are effective. I do mindfulness, meditation, yoga… but I also take my medication. And I do not take it because I have been manipulated. I take it because when I have tried being completely off of it, (primarily mood stabilizers), I have decompensated to dysfunction.
So, the comments here concern me. I just cannot get a sense of what people are truly saying. I can see how medications should not be the first line of defense and I also get that NAMI and pharmaceuticals are corrupt. Nearly everything is these days! But as a 30 year consumer, with a serious and persistent mental illness, I find some of these comments truly irresponsible as they seem to only discourage people from taking their medications. Every time I have started a new medication, I have done ample research and have weighed the pros and cons. It is for that reason, I have declined MANY meds in my lifetime. People do need to do the research on each medication they ingest!!
In the end, I agree we have a long way to go in understanding mental illness. I do feel much of these illnesses are derived from allergies, food intolerances, immune issues, and then just trauma and other stresses that impact the development of the brain that predisposes some to illness later in life.
I know personally medication has helped me, but I also do many of the other natural approaches… acupuncture, medication, mindfulness, weighted blankets, CBT, DBT, essential oils. magnesium, other supplements.. etc. It should be a holistic approach.
And if people can get back to baseline and stop a medication… that is IDEAL!! So, yes I agree there is corruption. I see the issues with NAMI. But, I do feel mental illness is a true biological illness, disorder, imbalance… and that does not mean it HAS to be treated with pharmaceuticals, but some have helped certain struggling.
Some of these comments worried me and I wondered what qualifications people possessed to discuss these concerns. Some seemed a bit extreme and misleading.
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I’d be interested to hear where you’re saying that people are being anti-scientific. I believe it is very much possible to feel that psychiatric drugs are USEFUL to you without accepting that you have a “chemical imbalance” or that the drugs are actually “fixing” anything wrong with your brain.
I like your comment that the environment and the brain/body are interacting all the time and affecting each other, and that early trauma does sometimes lead to alterations in the operation of the brain. What most people do NOT know is that the “decade of the brain” was also the time of discovery of “neuroplasticity”, or the idea that the brain can adapt later in life, including the idea that the brain can and does adapt in POSITIVE ways to a positive environment. Psychiatry has grabbed onto only the half of the story that suits them, and portrays that a “broken brain” from childhood can only be “fixed” with their drug interventions. This is NOT science, this is a marketing ploy. Science tells us that brains are not “broken” by trauma, but that they adapt to survive in the environment they are in, so the real key to healthy brains is healthy environments.
Additionally, the DSM “diagnoses” (I’m sure you’ve been given some of these over time) are also NOT scientifically determined, but are voted on in committees, and are based on subjective evaluations of another person which are ripe for bias and discrimination to enter in. There is no test for any “chemical imbalance” in anyone’s brain, nor even a concept of what a normal “balance” would look like. Mainstream psychiatrists like Ronald Pies and Thomas Insel have acknowledged this, and Pies called the chemical imbalance theory an “urban legend” that no well-informed psychaitrist takes seriously. Yet you have clearly been told that you have a “chemical imbalance,” even though no one knows that such a thing exists. This, again, is not scientific, and opposing it is not anti-scientific.
So while many views expressed her are not accepted by the psychiatric mainstream, my experience is that folks here are MUCH more interested and committed to science than the psychiatric industry itself, and that’s a gigantic understatement. This may be hard for you to believe, and I can certainly see how the statements made here seem shocking and out of line with what you’ve been told. But I encourage you to read some of the articles, especially the scientific research articles. There is solid scientific research showing that antidepressants increase rather than decrease the suicide rate, that people diagnosed with “schizophrenia” do better in the long run the less “antipsychotics” they take, that twin studies don’t actually prove any genetic heritability of any “mental illness,” and that labeling someone with DSM “diagnoses” increases rather than decreases the “stigma” that they experience, both from their own view and from other people’s treatment. All of these things are scientifically shown to be true. It sounds odd, but to find out what is scientific, you have to start by unlearning whatever you’ve been told about “mental illnesses” and “medication” and “diagnoses” and start over with an open mind, looking at the actual data. You may still draw the same conclusions in the end, but the psychiatric profession has some gigantic conflicts of interest that make them a very unreliable source of information.
Hope that helps a bit. I’m really interested to hear what parts you find “anti-science.” It should be an interesting discussion if we all are respectful and keep open minds.
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None of what you have said is “hard for me to believe” as I have heard these arguments before. I am an educated individual with an MS degree. My BA was in Psychology. I have read peer reviewed, scientific articles that actually do indicate that there are chemical and structural differences in brains from those who have Bipolar disorder than those that do not. I never indicated that the brain was “broken” or that a brain would be “fixed’ by a medication. I do feel it can manage certain mental illnesses, but I do not see medication as a cure or “fix all”. And I have never had any psychiatrist tell me that a medication would cure my illness. Often one will help for a long while, then it has to be changed in time. My illness is chronic and thus far, there is no cure. Not all those who suffer with a mental illness have trauma in their lives, so that throws out the idea that we need to recalibrate from the past. Some people do not even show symptoms until they are much older, as in both schizophrenia and Bipolar illness. My DX actually are; ADHD, C-PTSD, Bipolar 1, Somatic OCD… etc.(I have had others, but those stuck around) Do I question these diagnoses??? YES. Do they define me??? NO. I definitely know that I have a brain issues as I have struggled on and off since the age of 6 with YEARS of therapeutic approaches that never “recalibrated” my brain. Some of my symptoms are only controlled with medication. Other symptoms, if I practice religiously meditation, etc. (which is nearly impossible with the episodic mania, depression), I can see some relief. Bottom line, a diagnosis (from the DSM) is just a way to describe a set of symptoms and ultimately helps to file an insurance claim for reimbursement. Any psychiatrist (good one) will share that they use them to “point them in the right direction” for treatment modalities and possible medications. I have had psychiatrists who wanted me off of all my medications. And all of them have actually disagreed (some in large ways, others in small) in the end with certain diagnoses. However, none of this takes away from the FACT that the biological illness (that no matter how hard I have tried), has disrupted my life and I am actually on disability currently. I worked for over 20 years, even getting an MS degree, but my illness was that disruptive and exacerbates my chronic pain, IBS, and migraines. I also am someone who would rather it NOT be called “mental” illness as it affects my physical well being as well. And when you separate the two: mental and physical, there are inequalities that exist in the treatment and even payment from insurance of these disorders. “Mental” illness causes MANY people to be on disability as it is very disruptive and I feel if it were treated as a biological illness, perhaps it would be taken more seriously. After all, suicide is the tenth leading cause of death in America.
I do not believe I ever stated that there were NOT other ways to address a mental illness. I do know that many of those who struggle with schizophrenia actually are seeing benefits with only psychotherapy and other approaches. I was referring to my own lived experience of 30 years with Bipolar illness of which I know without medication I function very poorly. That being said (and I edited this out of my last comment b/c it was getting to LONG)… I actually do feel many medications are harmful. Benzodiazepines do make things much worse (not to mention can kill you if stopped abruptly), and should not be used but very briefly. And yes, I do feel that certain medication have caused people problems. I think I shared above that I have declined MANY prescribed medications over the years, even for “physical” ailments. Yes, some antidepressants for some people have increased suicidal ideation and have made things worse. There are those who do benefit from them, I know of people in my personal life who have taken them for YEARS and they are helpful. That being said, I lost my best friend to suicide last October and she was on a new medication (safris or saphris, not sure of spelling) and I do feel it may have lead to her suicide. She wasn’t the same after being hospitalized.
As far as the DSM, I actually do not like the current classification system. There is plenty wrong with it. And I do feel that many of the current diagnoses have lead to stigma. Often because some of the labels have been hijacked by the mainstream and used in daily vernacular.
I still feel that most mental illnesses are caused by am imbalance or a structural issue within the brain…. this could have resulted from stress over time, etc. We are literally just a bunch of chemicals in the end (highly organized and complex) and I have read studies that show biological differences between those who suffer and those who do not. I have even seen non-pharmaceutical approaches, like meditation, that shows compelling evidence that it can repair certain chemical and biological structures over time when practiced.
I question everything. I KNOW I struggle with an actual “brain disorder”. Your brain is the central command for perceptions, emotions, executive functions, etc. etc. etc. When an individual begins to have very distressing hallucinations, delusions, and acts in erratic ways there is obviously something going on with the brain. It could be a brain tumor. It could be a stroke. It could be dementia. It could be a side effect to a medication (some antibiotics cause mania, etc.). It could be a food intolerance (that can cause depression, anxiety, etc.) Etc. Or it could be what we now call a “mental illness”. I feel the brain is a complex organ, in our lifetime and beyond we are not going to “figure” to all out. I think it is laughable that anyone would believe they can dictate to anyone what is TRUTH or not… even science is only a collection of observations and theories. Science cannot indefinitely prove a phenomenon. And humans are only classifying and agreeing on semiotics to define the phenomenon occurring.
Someone had made a “claim” Bipolar people are living a lot shorter lives due to the pharmaceuticals and I challenge that ‘theory”. Plus, I looked it up and it is not 25 years. It is 9-20 years. There are too many other variables to weigh than to isolate 1 variable and say that is the cause for the shortened life span.
In conclusion, in my 30 years of being treated, I was never once told a pill would fix anything. I was told it might lessen the intensity of my episodes. I have been prescribed countless meds over 30 years and I routinely refuse medication as I am one to weigh the benefits and risks and sometimes the side effects are not worth it in the end.
Science is just a way to describe phenomena that is occurring. I agree that we have a LONG way to go in the field. I said already that most things are layered in corruption. I am not a huge fan of capitalism and having healthcare be the business that it has become. And it’s truly sad, but money is driving everything in our very capitalist society. Until we find a way to separate money from the acquisition of pure knowledge for the sake to improve lives… then research will have bias. And there can be biases that influence consumers away from medication… naturopathy is a HUGE market and often many of their products have turned out to be harmful too in the end (like certain essential oils that have not been tested).
Anyway, I probably won’t write much more. Everyone is entitled to their beliefs. I know that I am made up of chemicals in a highly organized system and yes my system will always strive for homeostasis, but sometimes that cannot be entirely reached. My illness has been truly disruptive and difficult to manage. Thanks for the discussion.
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Logic and linguistics dictate that the “mind” cannot have a “disease.” It’s really that basic. And if someone has a brain disease it is not “mental,” it is neurological. And if you have a neurological problem you should have this confirmed by a neurologist, not a psychiatrist. Psychiatry is not a legitimate field of medicine.
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It seems you consider the facts I’ve presented as “arguments.” They are not. What I have presented are scientific conclusions arrived at by psychiatry’s own researchers, clear statements made by psychiatry’s own spokespersons, and hard facts about how the DSM is put together. None of these things are my opinions. They are all known to be true from research or from direct statements from unbiased participants. Actually, in the case of Pies, a participant highly biased in favor of psychiatry, who still admits there is no “chemical imbalance” and attributes this idea’s promotion to the pharmaceutical industry, and asserts that psychiatry has never supported this claim (though there is also plenty of evidence that they have done so vigorously).
Have you read Anatomy of an Epidemic? It sounds like you have not. I’d strongly suggest you do so if you want to undestand what is going on here. There is plenty of research supporting a view questioning the validity of the psychiatric worldview.
If you have, as you state, scientific evidence of the ability to identify and detect “chemical imbalances,” I would be very interested in reading these studies. I’ve been studying this area for decades and have found nothing but the most circumstantial “evidence” presented on this, and as I’ve stated, even the psychiatric community is now backing away from these claims as being, at best, “simplistic.”
It is true that everyone is entitled to his/her own opinion, but we’re not entitled to our own facts. I would like to discuss the actual research you’re talking about. If you choose not to, that’s your choice, but I absolutely do not accept the characterization that I am “anti-science” simply because I don’t agree with your point of view.
I wish you well.
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Really have no comment. Wanted to delete my initial comment, but could not find “how” to. Thanks.
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hi, I don’t trust this article because right off the bat, that’s not Nami from the video game league of legends, it’s Nami from the anime one piece… Nami from lol is a mermaid… You clearly can’t make a simple google search and lost all credibility with that.
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It is certainly your choice to write off this and the other NAMI articles I have written. Someone else pointed out to me that the League of Legends reference was incorrect some time ago. It is true that my Google search linked that image and LOL, and that I did not double check it because it was just a sidenote and not a central point to the article. However, I assure you, I have cross checked most everything that is a serious part of this and other articles I publish.
I have to be honest that your inclination to write it all off for that reason strikes me as if you are looking for an excuse to remain in denial of certain very well known realities. That’s your call. But rather than write off what I’ve written *or* trust it entirely, I’d suggest you simply check out some of what I’ve said here yourself. If you were to do so, I believe you’d find it’s quite an accurate portrayal. And, really, I’m not sure how you – or anyone (except NAMI) – are served by choosing not to do that.
Thanks,
Sera
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i must say with emphasis the validating righteousness this critical analysis (that generously and relentlessly) responds to the unfortunate and willful ignorance of those who maintain dissenting opinion only and exclusively towards all that is not bastardized and biomedicalized to our peril, just seems to gets better upon each revisit. thank you.
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I found this website as I was searching for issues with Nami. I thought I was the only one lol. I had a personal unpleasant experience. Years ago, I had an undiagnosed bladder condition called Interstitial Cystitis. It was becoming life threatening, since I had lost so much weight, and dehydrated. I did have an anxiety disorder as well. Every ER called me crazy, since I was going there so often, complaining of nausea & complaining of bizarre symptoms of feeling bladder wasn’t empty. (They also assumed I was a drug addict) I don’t drink or do drugs that aren’t prescribed. My mother had contacted a Nami mother. One day the mother (I never spoke to) showed up with a police officer telling me I needed to go with them, without anyone questioning me. I was taken to the Psych ward to only be discharged and told I should go to eating disorder group. I knew something physically wrong, so I did research on YouTube of my symptoms and happen to find a Doctor from Chico (I praise) had looked at my bladder and diagnosed Interstitial Cystitis.
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Every year or several times a year there is a NAMI walk at our local park. I started as a Mental Health RN here but a traveler now. I see this one Psychiatrist who is one of the most corrupt. I’d see his patients in the ER as a the Psych Screener on a Poly Pharmacy of meds. I’m surprised smoke wasn’t coming out of their ears. He’d eyeball me just walking my dog as if I was some anti NAMI infiltrator (Not a bad idea). I guess there is no rest for the wicked and the paranoia they’ll be exposed.
I looked online at their staff and/or board of directors a virtually who’s who of corrupt psychiatric careerists. Several I know of their hidden abuse and neglect and coercion of patients.
Thank you for exposing the TRUTH. I am a patient too and have suffered the same myself. Medications have their place but when it becomes the whole treatment plan with everything else as a tokenistic after thought it is evil and corrupt.
Psychiatrists operate in a spectrum where they don’t have to answer for poor decisions. They know much less than most think they do I have learned in 28 years in just basic things like tapering. I can count on my hand the number of decent psychiatrists I’ve worked with. One social worker I worked with said they are all prima donnas or on their way to become one from peer pressure.
Big Pharma and Insurance companies the evil alliance that run healthcare policy. I will keep pushing for socialized medicine as the opponents call it that is well run to weaken insurance company profiteers and their big buddy Big Pharma and all the FAKE advocacy groups.
Please do an update article if not already.
Oh don’t forget the SEO (Search Engine Optimizers) and Social Media Experts that are hired guns to saturate the google search pages with their skewed articles pushing the truth further and further to the bottom of the list.
We who speak truth need to get better in outwitting these hired guns with viral messages with in depth documentaries, videos and articles like this one. I was good at that for a time but you blink and you are light years behind.
We need to go beyond that with revolutionary solutions with planning and execution that creates results and beats the lies down to shame that inspires the average reader to support it and demand it plus the replicated well designed research behind it. Thank you Mad in America for fighting the good fight. I am by your side.
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